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Two years ago, six year-old Sophia Gibson was experiencing up to 80 seizures a day and spent more time in a hospital bed than she did in her Newtownards home.
Sophia, from the West Winds estate, suffers from a rare form of epilepsy called Dravets Syndrome and after three long years of campaigning by her parents Darren Gibson and Danielle Davis, Sophia was granted a long term licence for medicinal cannabis oil on Friday, July 13, 2018.
Since then Sophia has taken on a new lease of life and there has been a dramatic improvement in family life for her, her parents and four-year-old brother Mason.
“If she makes it until July 13 this year, it will be two years Sophia hasn’t had to be hospitalised because of a seizure,” Ms Davis explained. “Before we would have been up in hospital more than in our own house – that was our normal.”
Sophia is now able to enjoy time playing in the sun like any other little girl of her age.
“Before she would only have been out in the sort of sun we are now experiencing for five minutes before she had a seizure,” Ms Davis recalled. That meant during good weather the family would have been split up with one parent shielding Sophia indoors while the other parent was outside trying to entertain Mason.
Ms Davis said during last week’s good weather, Sophia was out enjoying the sun from morning until night-time. “She played on the trampoline – she had so much energy,” she said.
Whenever lockdown was eased and Kiltonga Wildlife Centre was re-opened the family went for a visit there. “Sophia was able to walk right round the duck pond – before she would have only reached the first set of benches before she took a seizure,” Ms Davis explained. “The cannabis oil has given her a new lease of life.”
Sophia is a pupil of Clifton School in Bangor where her teachers have noticed a difference in the little girl’s behaviour since taking the cannabis oil.
“Sophia has learning difficulties and would have had trouble socialising,” Ms David explained, adding that before the current Covid crisis she had made a friend at school. “Her teacher said whenever they had free time the two of them would have made their way to the sand pit and played together,” she added. “Sophia’s teacher said it was lovely to see.”
Sophia is still the only person in Northern Ireland to receive whole plant cannabis oil through the National Health Service. “So many years down the line not much has changed for other kids,” her mother said.
Ms Davis has sat as a lay member of the National Institute of Health and Care Excellence exploring how cannabis oil could help in the treatment of conditions such as epilepsy and multiple scelerosis. “The only thing I could get through was a research recommendation,” she said.
At the start of the year, accompanied by Ards and North Down councillors Jimmy Menagh and Philip Smith and Strangford MLA, Michelle McIlveen, Ms Davis met with Health Minister Robin Swann and his chief pharmaceutical officer.
The meeting was to discuss how they could drive forward the availability of cannabis oil for more patients in Northern Ireland. “After speaking to the Health Minister I believe Northern Ireland will not be left behind and they will be looking at how we can benefit from research,” said Ms Davis.
The family have told the authorities they will co-operate with them in any way they can and make Sophia’s medical history available to them.
Messages are continuing to be sent to on Sophia’s Facebook page about children who are experiencing a lot of seizures, often lengthy ones. “I know how they feel because that was us all those years ago,” Ms Davis said.
“Your heart breaks for them. Even to this day we still have anxiety about Sophia’s seizures. There are still a lot of them but they are lower in number and the length of time each seizure lasts and she doesn’t require emergency meds as often.
“I don’t know how much more evidence people need,” Sophia’s mother said, pledging to continue to keep campaigning for the cannabis oil to be more readily available here.
Sophia will be nine years old in a few weeks. “I dread to think what it would be like if Sophia didn’t have cannabis oil on the NHS,” her mother said. “Would she be looking forward to her nineth birthday or would we be visiting a headstone?
“It does take a lot of stress of us as a family and that’s why we will continue to keep fighting for everybody else – for adults and children,” Ms Davis promised. “It is close to our hearts and we can’t stop until lots of people get it on the NHS.”